Education and outreach
The style, format, and information included in Tier 1 communication vehicles may vary depending on the population within each state, but examples produced by CDC or states can be helpful as a guide. In addition, more tools and resources are needed that facilitate the clinical identification of Tier 1 conditions.
Resources
Information for patients/consumers:
- English and Spanish fact sheets on BRST assessment and results for those with low[PDF 385.40 KB], moderate[PDF 408.26 KB], and high HBO risk (Georgia DPH/Core Partnership)
- Connecticut Department of Public Health Genetic Testing for Hereditary Breast and Ovarian Cancer — What You Should Know
- BRCA1 and BRCA2: Cancer Risk and Genetic Counseling
- NHGRI: Learning About Breast Cancer
- Cancer.net information about sharing genetic test results with your family
- Genetic Testing for Hereditary Breast and Ovarian Cancer – What You Should Know (Connecticut)
- Bidirectional cancer registry reporting materials for patients
Information for providers:
- Connecticut Department of Public Health HBOC fact sheet
- Gene Reviews: BRCA 1 and BRCA2 Hereditary Breast and Ovarian Cancer
- Bidirectional cancer registry reporting materials for providers
Information for state health departments:
- Georgia Department of Public Health Enhancing Cancer Genomics Practice Through Education, Surveillance and Policy Guidance Document
- Michigan Department of Community Health Tier 1 Planning Timeline Example
- Michigan Department of Community Health Potential health or intermediate outcomes for MDCH Cancer Genomics Translation – data based planning sheet example
- Michigan Department of Community Health Cancer Genomics Program Fact Sheet
- Collaborating for Impact: Public Health Genomics and Cancer Control
Michigan: Michigan created and copyrighted the Cancer Family History Pocket Guide©, a hand held tool for providers that assists with risk assessment and referral guidelines for patients with a family history of breast, ovarian, colorectal and endometrial cancer. They have educated health plan administrators through newsletter articles, educational packets and a CME online module. One of the major Michigan health plans, with help from the Department of Community Health (MDCH), surveyed and distributed educational materials to primary care providers via email distribution and a dedicated website. As an indirect product of this outreach campaign, MDCH partnered with the Cancer Resource Foundation, Inc., to make available more than 50 cancer genetics tests to the underinsured through a co-pay program.
Connecticut: Connecticut utilized board-certified genetic counselors to provide in-service trainings to providers. Their approach of offering and actively promoting in-services to each hospital was successful, with twenty-three (70%) of the 32 facilities invited taking advantage of the opportunity. As part of a 2011-2012 Healthy People 2020 Action Project, the Connecticut Department of Public Health Genomics Office is promoting cancer genomics best practices for HBOC. The purpose is to inform Connecticut health care practitioners about evidence-based recommendations for referral to, and use of, cancer genomic services. Educational outreach entitled “Cancer Genomics Best Practices for Connecticut Healthcare Providers” [PDF 7.80 MB], consisted of materials including:
- Hospital-specific tumor registry data on diagnosed cancers suggestive of HBOC and Lynch Syndrome;
- Evidence-based recommendations for genetic counseling and testing;
- A slide-chart clinical decision support tool containing current, evidence-based referral criteria for HBOC;
- Fact sheets and resources for providers and patients, including “Hereditary Breast and Ovarian Cancer – Information for Patients and their Families”.
- A list of cancer genetic counselors in Connecticut.
New York, Massachusetts, and Connecticut: A partnership of three states developed and disseminated materials about genetic counseling and testing for those concerned about a personal and/or family history of HBOC (poster, webpages, hotline to help folks identify a nearby genetic counselor who could provide genetic counseling on a zero-based sliding-fee scale). Posters were distributed throughout the state and a letter sent to 25,000 providers to inform them about BRCA 1 & 2 genetic counseling and testing.
Mid-Western States Collaborative: Public health and genetics professionals in the states of Illinois, Indiana, Kentucky, Missouri and Ohio worked together to produce a flyer “Genetic Testing for Breast and Ovarian Cancer … It’s Not Just a Simple Blood Test”.
Georgia: Partners including the state of Georgia DPH developed educational materials on HBOC in English and surveyed health care providers to identify knowledge gaps. Approximately 43% of surveyed providers [PDF 126.38 KB] were unaware that HBOC could be inherited through the paternal lineage, and 77% of providers did not recognize ovarian cancer as a risk factor for HBOC. Georgia partners used the Breast Cancer Genetic Referral Screening Tool or B-RST in various clinics around the state. They have developed a standard formatted lecture/presentation to help public health clinics use this tool in their clinics.
Oregon: Oregon set up a regular call and a series of webinars with providers participating in the Oregon Breast and Cervical Cancer Early Detection Program. They educated the Ashkenazi Jewish population by creating a specific toolkit and partnered with non-profits to provide educational outreach through community presentations and social networking.
Los Angeles VA Hospitals: Although not statewide, a CDC funded program focused on Los Angeles VA hospitals’ Women’s Health clinics and produced a cancer genetics toolkit, CME approved lecture series, website, and information sheets [PDF 2.62 MB]. A questionnaire for patients and a cancer family history reminder system for use in Electronic Medical Records was also developed. [PDF 110.73 KB]